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3 Lessons from a Patient Who Faced Her Dragon

Born with a rare, genetic disease, an HAE patient shared her story with CSL Behring staff in Kankakee, Illinois

HAE patient Zahra

Zahra Khan sees her life as a fairy tale with herself as the princess and her husband Umar as Prince Charming. The trouble was, for many years, her tale also included a dragon: her lifelong battle with the rare disease hereditary angioedema (HAE), she recently told employees at CSL Behring’s Kankakee, Illinois, facility. That dragon, a genetic condition that involves dangerous episodes of swelling, was trying to lock her away.

Khan’s earliest memory with HAE was when she was two years old. “My face was so severely swollen that it was unrecognizable,” she said.

Here are three takeaways from Khan’s message to employees at CSL Behring, which researches and manufactures treatments for rare and serious diseases.

1. Sometimes it takes bold action to get the right care.

Khan’s parents knew they needed to help their daughter fight her dragon from the young age of two. In 1999, her father decided they needed to move to the United States from Pakistan.

“Seeing my attacks made his heart sink. He knew the spell I was under because he had strange swellings too,” Khan said. “My father felt that the more advanced technology and medical care in the United States might help us find out why I had suffered from these attacks.”

He was right. Still, it would take more than ten years for her to get the correct diagnosis.

2. Face your fear.

In 2010, just two months after Khan married her husband, her dragon paid her a visit. It started with a small lump in her throat while making tea. She disregarded it at first thinking it was a cold, but minutes later the lump was starting to steal her breath.

Her husband whisked her to the emergency room where they waited for test results.

“I had never had a throat swelling before. It was terrifying. It was at that point when I realized this dragon could take my life,” Khan said.

She received the HAE diagnosis a few weeks after her visit to the emergency room.

“Understanding there was a specific cause and a name was a huge relief. It felt like my family’s prayers were answered and my mystery was solved.”

3. Spread the word about rare disease.

After receiving the results, Khan received treatment for HAE, which has helped her feel “independent, resilient and empowered.” Farewell, to the dragon.

“I have learned to accept HAE is a part of who I am and it can’t hold me back now,” Khan said. “I am free to help other people who have this dragon.”